In Latvia people with disabilities who do not have their own financial means or cannot get help from relatives usually live in an institution. A small subsidy is available to pay a personal assistant, but it does not go very far. Irina Parhomenko works at APEIRONS, which is dedicated to ensuring that personal assistance legislation becomes reality.

Draft law on assistance withdrawn with onset of financial crisis

In 2009, the Latvian Parliament discussed a draft law on personal assistance. They addressed what the service would look like, how it should be organized and who could become a personal assistant. However, the process was postponed until 2012, explains Irina Parhomenko. “It may sound pessimistic, but that was because of the financial crisis. Otherwise, Latvia has made many positive advances since its independence from the Soviet Union in 1991.”

What has been the biggest change? “The stereotypes are changing. Since the borders were opened, many Latvians have traveled to other countries and seen how people with disabilities live elsewhere. While we may not be seen as equals yet, we are beginning to be seen as people who can take responsibility.” Irina Parhomenko is 50 years old and works as a volunteer on the project at APEIRONS, an organization that works to improve conditions for people with disabilities. Irina Parhomenko has been a wheelchair user for ten years, she lives in an apartment with her mother, who helps her with practical matters such as household chores and errands to authorities that are not accessible. “Otherwise, I’m independent. I can cook and I take a taxi to places where I need to go. Taxis are expensive, of course, but public transportation isn’t accessible to me, and my mom can’t help me all that often.”

Lobbies politicians

Irina Parhomenko believes that the legislation process will begin again and APEIRONS is lobbying politicians and officials at the ministries through regular meetings. In the past it was a problem that the UN Convention on the Rights of Persons with Disabilities was only signed, but not ratified. However, Latvia ratified the UN Convention in January 2010, which according to Irina Parhomenko inspires more hope for the future. She hopes that APEIRONS will be able to run one of the personal assistance pilot projects that will probably begin if the government passes assistance legislation. “Then it may be possible for us as a non-governmental organization to administer a pilot project. Personal assistance is a brand new concept compared with how it worked during the Soviet period, they need our knowledge.”

Pension doesn’t go far; life in an institution is the alternative

Latvia offers a pension of € 110 per month to people who have congenital disabilities and € 220 for people who became disabled as adults. It is possible to live on the higher sum, but it is a life of poverty, according to Irina Parhomenko. “Yes, it covers rent and food, but not much more.” People with impaired mobility, who are blind or who have a mental disability are defined as class 1 (of three disability classes) and are entitled to an additional € 150 per month. The individual may decide how to spend the money. When parents help their children, the money is usually incorporated into the household budget, while others may use the money for transportation, rehabilitation, massage or physical therapy or to pay someone to provide practical assistance, according to Irina Parhomenko. “Since the minimum wage in Latvia is € 257, the money doesn’t go very far if you want help that resembles personal assistance.”

Nor are in-home support services available to take care of personal needs, according to Irina Parhomenko. “At best you can get help with cooking, shopping and cleaning a few times a week, but that's mainly for people who live by themselves.” People who need a lot of practical help are forced to find their own solution, which may be help from relatives, or they have to pay for help out of pocket. “For people who don’t have anyone to help them, or who don’t have the money to pay for assistance, the only alternative is life in an institution.”

What is life like in the institutions? “The people there are totally dependent and have no chance of working; they eat, sleep and watch TV.” Quite a few people also live there who have minor disabilities, but are unable to live on their own. Irina Parhomenko tells about a friend who lived in a residential institution, but who managed to leave. “He was always trying do things on his own, like studying. Finally he managed to leave the institution when he met and developed a relationship with a woman who worked there as a nurse.”

Do you think that people who live in institutions would like to have personal assistance? “Definitely, I know many people who would like to live in their own homes, visit whoever they want and choose who they can invite to their homes.”

How personal assistance services should be organized according to Irina Parhomenko

The most recent proposal for personal assistance was largely based on temporarily providing training to jobless people to work as assistants, which would entail a major role for the state employment service. However, Irina Parhomenko would like to see a more advanced proposal. “You should be able to choose who will be your assistant and assistance should be customized for each individual; the person with disabilities knows how the assistance should be designed. It should be carefully stated who can be the employer, which should be the individual, local authorities or a social organization.”

Irina Parhomenko also believes it is necessary to train assistants and establish criteria for who is suitable to be an assistant. “Being a personal assistant should be an occupation, I think that’s the best solution. The training program should the taught by medical specialists, psychologists and social workers, but above all, people who have disabilities, since they have personal experience of what the occupation of assistant involves.”

Personal assistance in Sweden is a model

Sweden’s personal assistance system is a model for Latvia, but also an opportunity to save time, according to Irina Parhomenko. “We use your experience when we look at our circumstances and opportunities. We can save time and avoid reinventing the wheel.”

What do you think of recent attempts by politicians to cut costs for assistance in Sweden? “It’s really a shame, but the financial crisis probably affects everyone, I don’t think Latvia will be affected by the situation in Sweden, we’ll learn from the experience of other countries.”

I explain how some regulatory authorities in Sweden are currently working on formulating a needs assessment instrument for personal assistance that would ultimately be able to calculate the number of minutes for the individual’s total needs in life. “I think it’s wrong to count every minute, because it’s impossible to predict everything that a person may need. Some people might not get the help they need. If you were to register every moment of your life, you wouldn’t have time to live life,” says Irina Parhomenko.

Irina Parhomenko was interviewed by Kenneth Westberg on February 20, 2010